Friday, August 10, 2007

Autism Intelligence - Does Language Matter?

Dr. Laurent Mottron is the leader of the Mottron-Gernsbacher-Dawson team that recently released a study in which autistic and non-autistic students were given two tests, the the WISC, which relies heavily on language, and the Raven's Progressive Matrices, in which the test taker has to select the missing pattern which would logically complete the series. The results, trumpeted across the Neurodiversity blogosphere, indicated that although autistic students tested in the lower intellectual range using the WISC test many did well on the Raven's test, presumably demonstrating that autistic students, or at least the ones selected by the Mottron team, had intellectual abilities not revealed by the WISC test which requires substantial language ability.

Given that the test was administered by Dr. Mottron's team with the autistic participants diagnosed at the same health facility where Dr. Mottron has spent his career studying high functioning autistic persons I have some reservations about the test, how it was administered and what it really means for autistic persons other than those chosen by the Mottron team. And the fundamental premise of this approach seems misguided. If you don't do well on one type of test, try another, keep trying until you find one that you can do well on , try one that doesn't involve something like ... oh ... understanding language.

Dr. Mottron's career has been spent studying autistic savants, persons with Aspergers and High Functioning autistic individuals as his study abstracts expressly state. He publishes as many as 3-4 such studies on high functioning autistic persons in any given year, year after year. I have been unable to locate, using Google Scholar, any reports where Dr. Mottron bothered himself with low functioning autistic subjects like my son Conor.

The good Doctor is also an active opponent of ABA intervention for autistic children. He has actually appeared before the Canadian Senate committee examining autism funding in Canada to oppose public funding of ABA intervention for autistic children. Dr. Mottron also provided an affidavit in support of his colleague Michelle Dawson when she applied for intervenor status before the Supreme Court of Canada to oppose the families in the Auton case who were seeking to require the BC government to include ABA treatment for their children under that province's medicare programs. Ms Dawson is herself a high functioning autistic person who has been active in opposing ABA and in criticizing parents and other activists seeking to obtain ABA interventions for their own children. Objective they are not.

Dr. Gernsbacher, the third member of this research trio, has publicly asserted that autistic persons like Ms Dawson should be consulted in researching autism issues. She has, to my knowledge, never addressed any resulting objectivity issues arising from subject participation in such research and whether researchers with such strong personal agendas can truly deliver an objective study or analysis of the issues on which they appear as public, legal and political advocates. Nor has she explained how low functioning autistic persons with limited understanding of language could be consulted with respect to such research. Does she assume that someone like Ms Dawson, who is very intelligent and has excellent communication skills, shares the same real world life challenges as a low functioning autistic person with limited understanding of language? Can someone who is at the very high functioning end of the autism spectrum of disorders communicate the perspective of someone who can barely communicate if at all because of an almost total lack of language capacity? Does it matter?

It seems particularly odd to me that Dr. Gernsbacher could assert that a high functioning autistic person should be consulted in research designed to measure autistic intelligence but not low functioning autistic persons. Of course, the lower functioning persons, like my son, would not be able to engage in such discussions because of his limited understanding of language. Presumably Dr. Gernsbacher believes that a person with a high functioning disorder on the autism spectrum can speak for someone who has a similar but different disorder on the low functioning end of the autism spectrum. It is not a position which I would endorse as the parent of a low functioning autistic child.

Language is one of the most striking characteristics of the human species. While many other animal species communicate with each other only humans have the capacity for such complex, abstract and adaptable communication. It is this communication capacity that has allowed us to become what we are today. It allows us to understand the world around us and to organize our societies, develop our sciences and medicines, govern ourselves by laws and understand the nuances of life through our arts. It is my son's lack of ability to comprehend language that makes it so difficult to communicate with him about almost every aspect of daily life. It is why a behavior based intervention like ABA is so critical in allowing us to communicate with Conor, the same ABA that Dr. Mottron and Ms. Dawson have publicly advocated against in Canada.

Conor has demonstrated intelligence many times. He routinely surprises us with his skills with computers and video equipment and his recognition of places and locations as we travel in the family car. But he has a very serious lack of ability to comprehend and communicate with language, written or spoken. It is that lack of ability in that critical area that renders him low functioning. The real world is not a Raven's Progressive Matrices test. Real World functioning requires understanding and ability with language to develop elaborate systems of thought and organization and to communicate the existence of basic dangers in daily life. The Real World is a difficult and unforgiving test. The Real World does not always allow for "do overs" if your child, lacking in language and understanding of life's complexities, wanders into automobile traffic or other such dangers. Language counts. Any measure of intelligence which excludes understanding of language does not itself pass the Real World test.

8 comments:

You have not approved two of my messages here, and you haven't stated the reason, so this might be a waste of time. You have a well earned reputation for censoring, I might add.

Your post contains several unsupported claims and assumptions. For example, you are assuming Michelle Dawson is high functioning based on her writing ability. I have not met Michelle Dawson in person, so I can't comment whether she is high or low functioning (even if I accepted one of the conventional classifications of such). You seem to think you can.

In your opinion, is Professor Stephen Hawking a high functioning disabled person, on the basis that he writes books and so on?

Furthermore, it is clear that the study you refer to includes several "truly low functioning" autistic kids, i.e. children with a near-zero Weschler IQ. There are many such children in the study. The average Wescheler IQ was in the 25 percentile or so, as I recall.

Some of those children did score rather well in the RPM test, some did not. The fact that some kids presumed to have near-zero IQs are actually bright is one of the ground-breaking findings of the paper. (Autistic people knew this was the case, but it's a counter-intuitive non-mainstream finding, now formalized).

With respect to THIS subject I have not me Ms Dawson in person but I have talked to her briefly by telephone twice when she was seeking to obtain a copy of a legal brief prepared for the Autism Society New Brunswick when I was ASNB President. She was an intervenor in the Supreme Court of Canada proceedings in Auton and she gave testimony before the Canadian Senate proceedings examining autism treatment funding in Canada. She is also, as the article discusses a researcher. So yes Joseph, on the basis of that information I consider her high functioning. And yes I consider Stephen Hawking to be very high functioning also. I think common sense dictates that conclusion both with respect to Ms Dawson and to Mr Hawkins.

I have read the actual study and it is not at all as clear as you indicate. I am also very interested in selection bias for that study given the personal agendas of the researchers involved.

As for your statement that "Autistic people knew this was the case" how do you have the authority to make such a sweeping statement? Are you talking about my son who has Autism Disorder when you make that bold unsubstantiated statement?

Deriding Dr. Mottron for only researching "high-functioning" autistics is, in my view, inappropriate. By doing so, you are implying that any research in autism that does not focus on the LF end of the spectrum is inherently wrong, or immoral. Consider that that vast majority of autistic individuals being diagnosed today do not fall into the LF category - are you recommending that any research on this group not occur until you have the answers you want for your son specifically?You are aware, I hope, that many autistics have demonstrated strong language skills later in life - well after parents and professionals had assumed that their language skills were deficient. In other words, the observers assumed that, since the individuals did not communicate in a way that was understandable to the observer, that no "real" communication was taking place. I would point you towards Sue Rubin as a great example of someone who fell into this category, but now is able to communicate very effectively using a typing device. As it turns out, her speech and writing skills were almost nonexistent - her language skills were fully normal. I hope this is the case for your son as well, but your constantly belaboring the point of how deficient he is in that area indicates to me that you may consider his lack of ability to communicate to be a foregone conclusion.I also wonder, in reading various posts and comments over recent months, what speech skills your son does have? You have mentioned that he has made great strides with ABA in this area, but also have mentioned that he lacks alomst all ability to communicate. Is his progress coming more in the area of picture exchanges and sight words, or is he conversing a bit? If that's too personal a question, please ignore it.

He's almost completely paralyzed and depends on others for the most basic of needs. If he's high functioning, I must not understand the word "functioning".

You must also believe Amanda is high functioning. OK.

Really, help me understand this. Your son is less functioning than Stephen Hawking because...? Are you looking at the cognitive aspect exclussively? If your son could communicate with a keyboard right now, you'd no longer think of him as low functioning?

BTW, selection bias is possible in the study, but in the group of children I think the Weschler scores were in line with those of groups of children in other studies. The adults did in fact had a higher IQ than I would've expected, and that's one thing I'd like to ask Michelle. I think she'll write a post about the study where these issues can be discussed, and I'm looking forward to it.

As for your statement that "Autistic people knew this was the case" how do you have the authority to make such a sweeping statement?

To please the semantics police, let me restate: Some people in the autistic community knew this was the case.

Your comment was posted despite, and not because of, your attempt at goading in your opening sentence.

I didn't deride Dr Mottron for researching only high functioning autistic persons. I highlighted his area of expertise with high functioning autism nd pointed out that he really has no expertise with lower functioning autistic persons. This is a significant point in relation to the subject matter of this study and of the rather exaggerated press releases that accompanied its publication.

The good Dr. has maintained, despite limited or no personal research with lower functioning autistic persons that autism intelligence is underestimated and gee whiz now he has his own study to prove it. His objectivity for that reason, and for his public advocacy against ABA, calls into question his objectivity in conducting this "study". That was the expressly stated reasons for my reference to Dr Mottron which I have now repeated for your benefit so you need not infer any others.

And no I am not suggesting that there should be no research on higher functioning autistic persons so your question about waiting until I have the answers I want specifically for my son is silly.

On the point that the vast majority of autistic individuals being diagnosed today do not fall into the LF category - is that your personal opinion or do you have a source and a link to back that up?

As for the Sue Rubin story the example of one individual or even a handful is interesting but has no bearing on the many thousands of autistic persons who do not share her underlying abilities and never have an ability to communicate by any means.

As for my son's abilities I do not think your questions are asked in good faith. But I will try to explain this to you in a way that can penetrate your Neurodiversity ideology. My son is low functioning, I am not ashamed to say that. It does not diminish my love for him one iota. His low functioning description is reflected in professional assessments. His low functioning status arises from a very limited understanding of language and ability to communicate by any means. So please cease and desist with your ND wonder stories about technological methods of communication. ABA HAS helped him, using language he has learned to communicate basic needs and understand basic direction. With ABA he has learned some reading skills, though well below his chronological age level and math. He also acquired some real life skills. These may not compare to your internet ND friends but they are significant gains for Conor.

Conor did not receive 40 hours of intensive ABA intervention from the age of 2-5. Such services were virtually non-existent in New Brunswick when he was diagnosed. I am a member of a group of people who have devoted thousands of hours of our time over he past 8 years to change that. Now we have increasing numbers of trained ABA therapists working with pre-schoolers in agencies which are subject to government accountability. We also assisted in establishing the program which is now training these people. We have also succeeded in having Teachers Aides and Resource Teachers trained to work with autistic children in our schools although we have a long way to go there yet but we have a commitment from the current government which has started to act on it already to continue the training of school workers.

I have continued to work with my son and have had trained people work with him in my home. He was and is severely autistic. But he has been helped immeasurably by the receipt of ABA intervention, the very intervention that Mottron and Dawson want to stop.

If you are serious about understanding some of these matters in more depth then as a long time autism advocate I suggest you stop imbibing the Neurodiversity ideology and visit some of the group homes and mental health facilities where some lower functioning autistic persons live, if you have the fortitude to do so. I have done so and it is not pretty. Lower functioning autistic persons exist and their realities are not pretty. Mottron, Dawson and Gernsbacher can devise all the tests they want to show that some autistic persons have some unappreciated intelligence and skills, a point which quite frankly did not need proving. But that has nothing to do with the deficits of many lower functioning autistic persons which prevent them from understanding and functioning in the real world without the assistance and kindness of others.

You may be too close to the issue to be unbiased. That's understandable.

There is value to both ABA folks and neurodiversity folks - as they are serving two ends of the same spectrum.

You know your son best - better even than his doctors, I have no doubt.

But I bet I think more like him than you or his doctors ever will. Yup - I'm one of those high functioning autistic folks.

Autistics need *everyone* to speak up for them, so that NTs can get even a small grasp of what the problems really are.

You want you son to mimic NT so that he fits in better and has less problems. Neurodiversionists want society to change so that they face fewer problems.

They're both right. It's not an exclusionary choice.

Society in general has no clue about spectrum life. Just none. Some education must be done on that front (increased public acceptance of neurodiversity only means "stop treating autists like they are not full, complete people, no matter their level of functioning), as well as continuing work on ABA without aversives. ABA can make low-functioning autists high-functioning autists, when it works well.

And *then* is when the inequities related to public acceptance really set in.

What do I find the worst about being a high functioning autist? I blend in too well, and I am assumed to be NT, and treated as such.

No stranger is ever going to tell off your low functioning son for his autistic behaviour - it's probably pretty obvious that he is on spectrum. I get scr*wed over in some way almost constantly, even from people that know I am HFA. Some just don't believe it and will refuse even reasonable accomodation.

So, Harold, to wrap - be careful what you wish for. If your son gains language and high-functioning status, it may not be any easier on him. He'll still be autistic underneath it all - ABA cannot ever change that, although it can help him blend in a bit better in certain situations.

My .02 - neurodiversity and ABA (or any effectice autism treatment) *both* have a place and I mean this to be helpful even if you disagree with parts of it.

"You want you son to mimic NT so that he fits in better and has less problems."

Greg, thank you for your comment. Although I do not agree with everything you said I appreciate the civility and tone of your comment. I do disagree with several points you made but most paticularly with the above excerpt. I do not want my son to "mimic NT". I want him to learn to overcome his deficits which are very real and which will preclude him from any independent life. He, for his own safety, requires 24/7 supervision. That is the point that ND does not grasp. It is not about mimicing anyone else. It is about giving him the tools to enhance and even protect his own life.

As an HFA with good NT-mimic skills, I can only say co-operate and listen to each other.

This sounds too simple, but after my informal diagnosis I have been researching the topic and have been increasingly more bewildered by the vast differences between an autistic and another autistic. A year ago I had some hard and fast opinions, but the inherent contradictions within my own makeup, behavior and skill sets - let along the others out there - suggest strongly that none of us really have a clue.

As said, NT mimicry is both a blessing and a curse. I pass as NT and have written for money, yet such a thing as a verbal sentence can vary between effortless and a major struggle. Guarranteed coherence can be hard or quite often impossible. I shake and twitch and try not to upset (or worse) with various food, crowd and noise sensitivities.

Sometimes I feel that I am not real at all, but an imaginary artifact screwed together in a desperate hurry just before rushing away to the real world.

I like to think that one day - hopefully before Conor wins his Nobel Science Prize - the auties and the NTs will work out useful ways of combining their skills and intelligence for the greater benefit of the planet and the human race.

There is a LFA woman called GTTO who is an excellent prose writer. Seriously excellent. Have a look at her writings.

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The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

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Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.